Duchenne Action Month – Week Five: Hope for the Future
September 28-30
Keep it going! While Duchenne Action Month may be coming to an end, there are still plenty of ways to get involved. We’re here to support you in the fight to End Duchenne, not just in September, but all year long. Nobody fights alone. Even apart, we are truly stronger together.
Join The Duchenne Registry
If you have Duchenne or Becker, care for someone living with Duchenne or Becker, or are a carrier, join The Duchenne Registry to share your data. The Registry recently transitioned to a new and improved smartphone app, so it is easier than ever before to join and update your data. By sharing your data, you become a citizen scientist by advancing research and treatments for Duchenne. Participating in the Registry also helps you learn about and enroll in actively recruiting clinical trials and research studies.
Race to End Duchenne — From Anywhere!
Even though we’re apart, our community has never felt more together! Run (or walk, or roll) as one, by participating in PPMD’s first ever Race to End Duchenne Virtual Series. Choose from a 5K, 10K, or 15K distance and run anytime between October 17 and November 1. Prior to October 17 we’ll provide an app to track your course and let you listen to messages of encouragement from members of our community! Just like an in-person race, every participant will receive an official Race to End Duchenne Virtual Series t-shirt and finisher medal. Duchenne doesn’t stop for a virus — and neither will we. Join us as we Race to End Duchenne this fall, wherever you are!
Stay Up-To-Date on Current Research
Duchenne research continues to progress, with multiple therapies in clinical trial. Stay up-to-date on the latest progress of drug development in Duchenne.
- Drug Development Pipeline
- Explore Clinical Trials
- Updates on Duchenne Clinical Trials / Approved Drugs
Become an Advocate
Next year marks the 20th anniversary of the MD-CARE Act which fundamentally changed the Duchenne care and research landscape. Join the fight to end Duchenne by raising your voice in Washington D.C. at PPMD’s Advocacy Conference. We also encourage you to sign up to receive Action Alerts, so that you can stay up-to-date with the latest advocacy news, as well as reminders to contact legislators on the most pressing issues throughout the year. We hope you will consider joining us in our efforts to continue the momentum that started two decades ago.
Download PPMD’s New Diagnosis & Early Care Guide
PPMD developed a comprehensive guide to provide accurate information that is easier-to-digest, and will help families to navigate caring for a child with Duchenne while maintaining a happy, rewarding life. This guide is broken down into four main themes, and we recommend families reading at their own pace and comfort level.
- What is Duchenne Muscular Dystrophy?
- Adjusting to the Diagnosis & Finding Support
- Care Considerations
- Research & Clinical Trials
